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Girl with Down syndrome holding flowers in park

Testimonial: "Overall, they agreed that more needs to be done by listening to parents, training staff and liaising with the community." Parent

Taking it further – speaking up for my child

20 August 2019

My teenage daughter loves music, going to concerts and (of course) shopping. She also has Down syndrome and autism. Recently, I decided to speak up about an issue that I think affects a lot of families.

Like many children with special needs, my daughter doesn’t show distress or pain in the same way as other children. So when I took her to the Emergency Department of our local hospital for medical care, the hospital staff were quick to dismiss our concerns.

It took 14 months to get a medical diagnosis because it was easier to send us back to our paediatrician rather than try to figure out what the problem was. I wasn’t happy with this, so I decided to write to my local federal and state MPs.

My federal MP was helpful and offered to write to the state Health Minister on my behalf but I decided to do it myself. I also reached out to a local special needs group on Facebook to see if this was an isolated incident, but it was not. So I gathered stories from other families who were happy to share their experiences and attached them to my letter.

The Health Minister forwarded my letter to Safer Care Victoria who set up a meeting between the hospital and myself. I told them about my concerns and they suggested that families bring a letter from their child’s specialist when they come to the Emergency Department. They also offer an ‘Autism Passport’ at the triage desk that families can fill out to help treat children with autism.

Overall, they agreed that more needs to be done by listening to parents, training staff and liaising with the community. This was a positive outcome that I hope will make a difference to children like my daughter who go to the Emergency Department in the future.

A practical suggestion that came from the meeting was to photograph reports on your child’s diagnosis and have them on your phone for any emergencies.

As someone who has been advocating for my daughter since she was a baby, I want to remind parents that you know your child better than anyone. If you feel something isn’t right, make sure that you get someone to listen to you. And if that doesn’t work, take it further. 

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